A co-worker, Renee, told me once as we were chatting about our kids that her son has autism and her daughter has pervasive development disorder (PDD), also a condition under the umbrella of autism spectrum disorders. Suddenly, in my mind, she went from “busy mom, customer service trainer, marathon runner, part-time actor” to “super woman.”
Since April is National Autism Awareness Month, Renee said she was willing to share her insight on raising a four-year-old son with autism and a twelve-year-old daughter with PDD.
Well-Being Hawaii: When did you realize your children had autism and how have you had to make adjustments as a family?
Renee: Well, my oldest was diagnosed with PDD at age two and at the time, my husband and I really had no idea what to look for. My daughter was doing a repetitive action while being evaluated that I didn’t even notice, she was looking at a book flipping pages, moving something on the wall and hugging her dad. Totally normal activities but the doctor spotted how she kept doing it and asked how long she has been doing repetitive behaviors. She would also have moments of phasing out or staring off into space and we have to touch her to have her snap out of it. We tell others who watch her to also help her snap out of those “spells.”
The next time around, with our son, we knew what to look for and immediately raised our concerns to his pediatrician when he was about to turn seven months old. Up until that point, my son was advancing ahead of the norm: he crawled the day before he turned four months and was making difficult babbling sounds at five months, and suddenly he stopped all progress. At nine months he was evaluated and started services at 18 months.
As for adjustments, having two children with autism has had an impact on our lives. I have had to limit my acting to independent films and extra work on feature films that are filmed on Oahu. Community theater is definitely on hold due to the time commitment. My husband and I have also had to rearrange our schedules and rely on our family’s help (thank God for them), when it came to scheduling the 20 hours of intense behavioral intervention DJ needed. The recommendation was 30 hours per week, but we just were not able to make that work.
WBH: What things do you think are needed to support our autistic kids?
Renee: My wish is for those kids who are potentially “recognized” as possibly autistic, and not only just autistic, but possibly considered “delayed” in their development, that their parents get them the services/help that they need and to not turn down services or deny that their child is autistic. It’s important that parents realize they didn’t cause this, and to some I have to state “this is NOT shameful.” My wish is for parents to know they’ll be possibly hindering their child’s progress if they don’t take advantage of services ASAP. I was concerned when they told me my son needed so many hours of therapy but he was identified as autistic early on and I really feel as though that the early diagnosis has helped him.
WBH: What’s your wish for your children’s’ future? Do you think of that or just live in the moment?
Renee: For DJ, my four-year-old son, I am living in the moment, taking one day at a time. I’ve had to get a thick skin because I know when to discipline him for a tantrum vs. let him be if he’s overwhelmed and shutting down. Other parents may just see what looks like a bratty moment but I’ll know what he’s dealing with.
For Rachel, since she’s 12, we are focusing more on “issues” that are part of her daily life that we are helping her to work on. We want her to see her triggers in order to develop coping mechanisms, since some of her issues (like the way she struggles with transitions in her day) will always be an issue in high school, in college or in a future career. She did tell us recently, “How am I doing mom, am I improving?” I was impressed that she was able to be reflective.
WBH: How do you take care of yourself all while trying to keep on top of both kids getting the best education?
Renee: My time allotted for acting has taken a significant cut, but I am still involved in the independent film scene, which is a nice outlet. I also go running on the weekend which is my wonderful “me time.” My husband and I also make time for the two of us just as a couple. It’s easy for the marriage to take a backseat when it comes to your children and their needs, so we plan date nights, even if that entails eating dinner out and then watching a movie at home because we are so tired. We make sure that at least some of the conversation is not about the kids!
WBH: Any advice to other parents with children who need autism services?
Renee: Always advocate for your child and make sure you understand the services that are being provided. Remember you are a key part of making sure your child has a successful future and you know your child best. Also, take advantage of support groups; just know you’re not alone.
We are currently having an extremely difficult time with potty training our son. As I was chatting with another mother who also has a son with autism, she just said, “you’ll get there” and that took a huge weight off my shoulders. I’ve been holding on to that!